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Sunday, October 23, 2016

Soup Sunday-Indian Inspired Chicken Soup



I've been sick ever since I got home from the HNF patient conference.  Nothing major just a cold and body aches.   I thought some chicken soup would be just the thing to make me feel better.

 I did this recipe with a bit of an Indian twist.  Some of the traditional ingredients in Indian cooking, like curry, coconut milk and turmeric also boost the immune system.  Adjust the amount of curry you use, more if you want it spicy, less if you want a less mild flavor.

I was doing my cooking this week with the Wisconsin Badger game on the radio, so I was inspired to use my Badger mug. Go Bucky! I'll be going to the game next week so there may be no recipes next week.

4 cups chicken bone broth
1 can coconut milk
2 boneless skinless chicken thighs
4 ounces sliced white mushrooms
2 large carrots chopped
2 large stalks celery chopped
1/2 cup lentils
3 tablespoons Indian Curry mixture
1 tablespoon turmeric
4 dried red peppers
1/2 cup sun dried tomatoes, sliced with scissors.

Put chicken broth in a saucepan. Add the chicken thighs. Simmer for 40 minutes. Remove and cool slightly, then shred the chicken.. Put the chicken back into the broth.  Put the mixture on  simmer and add the mushrooms, carrots, celery and coconut milk. Mix well.  Add the curry, turmeric and dried peppers. Cook for 20 minutes. Add the sun dried tomatoes.

Serves 4

***********************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 207 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing, CMT disease, CMT and exercise, exercise and CMT, CMT, athlete and CMT.Team CMT, CMT athlete, athlete and CMT, bike4CMT, walk4CMT,  CMTA, HNF, Tri4CMT, Walk4CMT, MDA





Wednesday, October 19, 2016

Curing the CMT Awareness Problem

HNF bumper sticker to raise awareness

"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." Edward Everett Hale

At the recent HNF Patient Centered CMT Summit, Rob Moore, husband of HNF CEO and founder Allison Moore gave the closing address.

He showed a video produced by the HNF where he asked a number of people if they had heard of MS, ALS and a number of diseases including CMT. Of course everyone had heard of all of the diseases except for CMT.

Moore concluded we have an awareness problem. I could not agree more. When  I was diagnosed I could not believe that over 250,000 Americans had CMT yet I had never heard of it. Many of the medical professionals I was dealing with had not heard of it either.

I agree we have a branding issue.  I know CMT is not the best name. I purpose we stop spending our energy on the name and embrace CMT,  It is what it is. ALS is not a great name either but they raised millions with their ice bucket challenge because everyone has heard of ALS.

When I founded Team CMT my primary goal was to raise awareness of CMT. I hoped people would see our Team CMT uniform, google CMT and perhaps learn about our disease. By doing media about our team members I hoped to put faces and names to this condition.

I realize many in the CMT community struggle to move, They have pain and fatigue every day.    In my talk at the summit as part of the exercise panel I shared that not everyone can be an athlete. However we each have a part to play to raise awareness.

The newest effort by the HNF will make it possible for every member of the community to raise awareness.   For a minimum $10 donation you can get a bumper sticker to place on your car to raise awareness. If you don't drive get one to give to a friend or family member. This is a simple and effective way for everyone to get involved in raising awareness.

Raising awareness of CMT is the foundation. We cannot raise money for research for a disease no one has ever heard of.  Money we need to find treatments and a cure. There is so much hope now because we have a drug for CMT 1A in clinical trials.

We also need to raise awareness so that those with CMT are diagnosed.  The more people diagnosed the more pressure there will be to develop treatments and cures.

I made a donation and my bumper sticker is on the way. I am going to ask my friends and family members to do the same.   It will be the only bumper sticker on my car and I will display it proudly.

I hope you will join me.  Follow the link to order yours
https://interland3.donorperfect.net/weblink/weblink.aspx?name=hnf&id=72


************************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 202 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.

CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing, CMT disease, CMT and exercise, exercise and CMT, CMT, athlete and CMT.

Curing the CMT Awareness Problem

HNF bumper sticker to raise awareness

"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." Edward Everett Hale

At the recent HNF Patient Centered CMT Summit, Rob Moore, husband of HNF CEO and founder Allison Moore gave the closing address.

He showed a video produced by the HNF where he asked a number of people if they had heard of MS, ALS and a number of diseases including CMT. Of course everyone had heard of all of the diseases except for CMT.

Moore concluded we have an awareness problem. I could not agree more. When  I was diagnosed I could not believe that over 250,000 Americans had CMT yet I had never heard of it. Many of the medical professionals I was dealing with had not heard of it either.

I agree we have a branding issue.  I know CMT is not the best name. I purpose we stop spending our energy on the name and embrace CMT,  It is what it is. ALS is not a great name either but they raised millions with their ice bucket challenge because everyone has heard of ALS.

When I founded Team CMT my primary goal was to raise awareness of CMT. I hoped people would see our Team CMT uniform, google CMT and perhaps learn about our disease. By doing media about our team members I hoped to put faces and names to this condition.

I realize many in the CMT community struggle to move, They have pain and fatigue every day.    In my talk at the summit as part of the exercise panel I shared that not everyone can be an athlete. However we each have a part to play to raise awareness.

The newest effort by the HNF will make it possible for every member of the community to raise awareness.   For a minimum $10 donation you can get a bumper sticker to place on your car to raise awareness. If you don't drive get one to give to a friend or family member. This is a simple and effective way for everyone to get involved in raising awareness.

Raising awareness of CMT is the foundation. We cannot raise money for research for a disease no one has ever heard of.  Money we need to find treatments and a cure. There is so much hope now because we have a drug for CMT 1A in clinical trials.

We also need to raise awareness so that those with CMT are diagnosed.  The more people diagnosed the more pressure there will be to develop treatments and cures.

I made a donation and my bumper sticker is on the way. I am going to ask my friends and family members to do the same.   It will be the only bumper sticker on my car and I will display it proudly.

I hope you will join me.  Follow the link to order yours
https://interland3.donorperfect.net/weblink/weblink.aspx?name=hnf&id=72


************************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 202 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.

CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing, CMT disease, CMT and exercise, exercise and CMT, CMT, athlete and CMT.

Saturday, October 15, 2016

HNF Patient Centered Conference New York


Estela Lugo, Jenny Decker and Brent Baker at HNF  Conference


Life has been so hectic this month. I have been so busy training and traveling I have not had time to blog.

On October 6th I attended the Hereditary Neuropathy Foundation Patient Centered CMT conference in New York.  I was asked to speak as part of a panel on exercise and nutrition. The panel was mostly Team CMT members.

The team was represented by Jennifer Decker, Kristin Gelzinis, Estela Lugo and me. Also on the panel was researcher Brent Baker  Dr. Baker presented his research on exercise and type 1A CMT..   The panel was moderated by Stefanie Sacks author and nutrition expert.  I was really honored to sit next to my fellow team members and listen to their inspiring stories of how exercise had changed their lives for the better.  Kristin has improved so much she is no longer in a wheel chair. Jenny Decker discussed her solo kayak trip around the big Island of Hawaii. Estela told how yoga has improved her fitness.

I shared the story of the founding of Team CMT and challenged the audience to use their talents to help us find treatments and a cure.

It was a day filled with great panel discussions on topics such as:

  • The patient as expert, health maker and collaborator
  • Public Policy
  • Latest research discoveries
  • The fearless caregiver
  • Gaps in patient reported and clinical outcome measures and barriers to therapy development
  • The art of being a successful patient
  • Participating in a clinical trial.
  • Update on Pre-clinical trials
The best part of the conference was meeting everyone. I met Robert Prior, a young scientist from Ireland with CMT  1X doing research on CMT. 1A. He told me his is going to find a cure for one type and then move on to the next. He moved to Belgium to study because there was little CMT research in his native Ireland.

I got to meet Dr. Walk, who will be in charge on the Pharnex trial in Minnesota.  I got a chance to ask him a few questions about the study and why the reject rate was so high and I got to meet the rep from Pharnex at there vendor booth.

CapTel was a vendor I got to talk to. They provide caption phones for the hearing impaired. This tool might really help me at work since I am struggling with hearing issues at work. Finding this made the entire trip worthwhile.

I got to meet so many people  including members of the HNF board and Team CMT. Many I have only known through pictures and facebook posts. The day went to fast I did not get to talk to everyone I wanted to talk to or spend as much time as I wanted with everyone.  It is so awesome to someone and know they just get what it is like to live with CMT. No explanation needed.

It was a wonderful and exhausting day. The venue was perfect and the conference was outstanding. I cannot wait till next year.  Hope to see you there.

**********



Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 202 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.
CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing




Saturday, October 1, 2016

Super Food Saturday Double Header




It is fall in Wisconsin. It seemed to turn cold almost overnight and has been raining almost non-stop all week. So it is a good time to be inside doing some cooking.  I have homemade tomato sauce on the stove made with tomatoes from my garden.  These two cozy treats help to add to the comfort and they are healthy!  The tea can be put together quickly. The cookies are great when you just have to have some chocolate. I used a wider toasted coconut that I got on Amazon. You can use any shredded coconut.



Turmeric Tea
1 cup unsweetened coconut milk
1 cup water
1 tablespoon ghee
1 tablespoon honey
1 teaspoon turmeric powder
1 teaspoon apple pie spice

Put all the ingredients in a saucepan. Stir and heat for 4 to 5 minutes. Pour into a heat proof mug and enjoy.

Super Foods:  Coconut milk, Ghee, Turmeric powder


No-Bake Coconut Cookies

2 1/2 cups gluten free rolled oats
1 cup wide toasted coconut flakes ( can also use shredded coconut, toasted)
2/3 cup honey
1/2 coconut oil
1 cup almond butter
1 tablespoon chocolate extract
8 tablespoons cocoa powder
1 teaspoon cinnamon
Himalayan pink salt and coconut sugar to sprinkle on top

Line two baking sheets with waxed paper, aluminum foil or parchment. Put the oat s,coconu, cocoa and cinnamon in a bowl and set aside. Combine the honey, coconut oil and almond butter in a sauce pan. Heat slowly until the coconut oil is melted.  Mix evenly and remove from the heat. Add the chocolate extract. Pour into the oat mixture and stir to mix. Drop by heaping teaspoons onto the cookie sheets.   Sprinkle the top of each cookie with a little salt and sugar,
Place the sheets in the freezer for 20 minutes.  Take the sheets out of the freezer and remove the cookies.  Store in a covered container in the freezer.

Makes 20 cookies.

Super Foods: Coconut oil, Gluten Free Oats, Coconut Flakes, Almond Butter

*****************************

Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015 and will represent the US at the World championship in Cozumel in 2016.

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon.

She travels around the country raising awareness of CMT.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 202 members in 38 states. We also have members in Australia, England,Scotland, Canada, Vietnam, Turkey, Finland, Scotland, France, Poland,Iran and Sweden. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

Keywords: Running, Running and CMT, triathlon, triathlon and CMT, athlete and CMT, cycling and CMT, paratriathlon, challenged athlete, Team CMT, Running for My Life-Winning for CMT. Hereditary Neuropathy, Charcot-Marie-Tooth.

CMT and running, CMT and triathlon, CMT and athlete, Charcot-Marie-Tooth and running, Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston Marathon Bombing